Observational Study

. 2016:2016:2720650.

doi: 10.1155/2016/2720650. Epub 2015 Nov 22.

Participant Experiences in the Environmental Determinants of Diabetes in the Young Study: Common Reasons for Withdrawing

Barbro Lernmark¹, Kristian Lynch², Judith Baxter³, Roswith Roth⁴, Tuula Simell⁵, Laura Smith², Ulrica Swartling¹, Suzanne Bennett Johnson⁶; Teddy Study Group⁷

Collaborators, Affiliations

Collaborators

Teddy Study Group:
Marian Rewers, Kimberly Bautista, Judith Baxter, Ruth Bedoy, Daniel Felipe-Morales, Brigitte Frohnert, Patricia Gesualdo, Michelle Hoffman, Rachel Karban, Edwin Liu, Jill Norris, Adela Samper-Imaz, Andrea Steck, Kathleen Waugh, Hali Wright, Barbara Davis, Jin-Xiong She, Desmond Schatz, Diane Hopkins, Leigh Steed, Jamie Thomas, Katherine Silvis, Michael Haller, Meena Shankar, Eleni Sheehan, Melissa Gardiner, Richard McIndoe, Haitao Liu, John Nechtman, Ashok Sharma, Joshua Williams, Gabriela Foghis, Stephen W Anderson, Anette G Ziegler, Andreas Beyerlein, Ezio Bonifacio, Michael Hummel, Sandra Hummel, Kristina Foterek, Mathilde Kersting, Annette Knopff, Sibylle Koletzko, Claudia Peplow, Roswith Roth, Joanna Stock, Elisabeth Strauss, Katharina Warncke, Christiane Winkler, Jorma Toppari, Olli G Simell, Annika Adamsson, Heikki Hyöty, Jorma Ilonen, Miia Kähönen, Mikael Knip, Annika Koivu, Mirva Koreasalo, Kalle Kurppa, Maria Lönnrot, Elina Mäntymäki, Katja Multasuo, Juha Mykkänen, Tiina Niininen, Mia Nyblom, Petra Rajala, Jenna Rautanen, Anne Riikonen, Minna Romo, Satu Simell, Tuula Simell, Ville Simell, Maija Sjöberg, Aino Stenius, Eeva Varjonen, Riitta Veijola, Suvi M Virtanen, Mari Åkerlund, Åke Lernmark, Daniel Agardh, Carin Andrén Aronsson, Maria Ask, Jenny Bremer, Ulla-Marie Carlsson, Corrado Cilio, Camilla Ekstrand, Emelie Ericson-Hallström, Lina Fransson, Thomas Gard, Joanna Gerardsson, Rasmus Håkansson, Monica Hansen, Gertie Hansson, Susanne Hyberg, Fredrik Johansen, Berglind Jonasdottir, Linda Jonsson, Helena Elding Larsson, Barbro Lernmark, Maria Månsson-Martinez, Maria Markan, Theodosia Massadakis, Jessica Melin, Zeliha Mestan, Kobra Rahmati, Anita Ramelius, Falastin Salami, Monica Sedig Järvirova, Sara Sibthorpe, Birgitta Sjöberg, Ulrica Swartling, Erika Trulsson, Carina Törn, Anne Wallin, Sofie Åberg, William A Hagopian, Xiang Yan, Michael Killian, Claire Cowen Crouch, Jennifer Skidmore, Stephen Ayres, Kayleen Dunson, Diana Heaney, Rachel Hervey, Corbin Johnson, Rachel Lyons, Arlene Meyer, Denise Mulenga, Emma Schulte, Elizabeth Scott, Joshua Stabbert, John Willis, Dorothy Becker, Margaret Franciscus, MaryEllen Dalmagro-Elias Smith, Ashi Daftary, Mary Beth Klein, Chrystal Yates, Jeffrey P Krischer, Michael Abbondondolo, Sarah Austin-Gonzalez, Rasheedah Brown, Brant Burkhardt, Martha Butterworth, David Cuthbertson, Christopher Eberhard, Steven Fiske, Dena Garcia, Veena Gowda, David Hadley, Hye-Seung Lee, Shu Liu, Xiang Liu, Kristian Lynch, Jamie Malloy, Cristina McCarthy, Wendy McLeod, Chris Shaffer, Laura Smith, Susan Smith, Roy Tamura, Ulla Uusitalo, Kendra Vehik, Ponni Vijayakandipan, Keith Wood, Jimin Yang, Beena Akolkar, Kasia Bourcier, Thomas Briese, Suzanne Bennett Johnson, Steve Oberste, Eric Triplett, Liping Yu, Barbara Davis, Dongmei Miao, Barbara Davis, Polly Bingley, Alistair Williams, Kyla Chandler, Saba Rokni, Joanna Boldison, Jacob Butterly, Gabriella Carreno, Claire Caygill, Ivey Geoghan, Anna Long, Molly Payne, James Pearson, Sophie Ridewood, Rebecca Wyatt, Elisabeth Aardal Eriksson, Ing-Marie Lundgren, Ewa Lönn Karlsson, Dzeneta Nezirevic Dernroth, Iris Erlund, Irma Salminen, Jouko Sundvall, Jaana Leiviskä, Mari Lehtonen, Randie R Little, Alethea L Tennill, Henry Erlich, Steven J Mack, Anna Lisa Fear, Oliver Fiehn, Bill Wikoff, Brian Defelice, Dmitry Grapov, Tobias Kind, Mine Palazoglu, Luis Valdiviez, Benjamin Wancewicz, Gert Wohlgemuth, Joyce Wong, Joseph F Petrosino, Santica M Marcovina, Vinod P Gaur, Richard D Smith, Thomas O Metz, Charles Ansong, Bobbie-Jo Webb-Robertson, Hugh D Mitchell, Heather Higgins, Sandra Ke, Jin-Xiong She, Richard McIndoe, Haitao Liu, John Nechtman, Yansheng Zhao, Na Jiang, Stephen S Rich, Wei-Min Chen, Emily Farber, Rebecca Roche Pickin, Jordan Davis, Dan Gallo, Jessica Bonnie, Paul Campolieto

Affiliations

¹ Department of Clinical Sciences, Lund University, CRC, Jan Waldenströms Gata 35, Skåne University Hospital (SUS), 20502 Malmö, Sweden.
² Health Informatics Institute, University of South Florida, 3650 Spectrum Boulevard, Suite 100, Tampa, FL 33612, USA.
³ Barbara Davis Center for Childhood Diabetes, School of Medicine, University of Colorado Denver-AMC, 1775 Aurora Court, Aurora, CO 80045, USA ; Colorado School of Public Health, Department of Community and Behavioral Health, University of Colorado Denver-AMC, 13001 E. 17th Place, Aurora, CO 80045, USA.
⁴ Institute of Diabetes Research, Helmholtz Center Munich and Clinic on the right of Isar, Technical University Munich, Research Group Diabetes e.V., Ingolstaedter Landstrasse 1, 85764 Neuherberg, Germany.
⁵ Department of Pediatrics, University of Turku, Kiinamyllynkatu 4-8, 20100 Turku, Finland.
⁶ Department of Medical Humanities and Social Sciences, Florida State University College of Medicine, 1115 West Call Street, Tallahassee, FL 32306, USA.
⁷ Department of Clinical Sciences, Lund University, CRC, Jan Waldenströms Gata 35, Skåne University Hospital (SUS), 20502 Malmö, Sweden ; Health Informatics Institute, University of South Florida, 3650 Spectrum Boulevard, Suite 100, Tampa, FL 33612, USA ; Barbara Davis Center for Childhood Diabetes, School of Medicine, University of Colorado Denver-AMC, 1775 Aurora Court, Aurora, CO 80045, USA ; Institute of Diabetes Research, Helmholtz Center Munich and Clinic on the right of Isar, Technical University Munich, Research Group Diabetes e.V., Ingolstaedter Landstrasse 1, 85764 Neuherberg, Germany ; Department of Pediatrics, University of Turku, Kiinamyllynkatu 4-8, 20100 Turku, Finland ; Pacific Northwest Diabetes Research Institute, 720 Broadway, Seattle, WA 98122, USA ; Center for Biotechnology and Genomic Medicine, Medical College of Georgia, Georgia Regents University, 1120 15th Street, CA-4123, Augusta, GA 30912, USA.

PMID: 26682228
PMCID: PMC4670659
DOI: 10.1155/2016/2720650

Observational Study

Participant Experiences in the Environmental Determinants of Diabetes in the Young Study: Common Reasons for Withdrawing

Barbro Lernmark et al. J Diabetes Res. 2016.

. 2016:2016:2720650.

doi: 10.1155/2016/2720650. Epub 2015 Nov 22.

Authors

Barbro Lernmark¹, Kristian Lynch², Judith Baxter³, Roswith Roth⁴, Tuula Simell⁵, Laura Smith², Ulrica Swartling¹, Suzanne Bennett Johnson⁶; Teddy Study Group⁷

Collaborators

Teddy Study Group:
Marian Rewers, Kimberly Bautista, Judith Baxter, Ruth Bedoy, Daniel Felipe-Morales, Brigitte Frohnert, Patricia Gesualdo, Michelle Hoffman, Rachel Karban, Edwin Liu, Jill Norris, Adela Samper-Imaz, Andrea Steck, Kathleen Waugh, Hali Wright, Barbara Davis, Jin-Xiong She, Desmond Schatz, Diane Hopkins, Leigh Steed, Jamie Thomas, Katherine Silvis, Michael Haller, Meena Shankar, Eleni Sheehan, Melissa Gardiner, Richard McIndoe, Haitao Liu, John Nechtman, Ashok Sharma, Joshua Williams, Gabriela Foghis, Stephen W Anderson, Anette G Ziegler, Andreas Beyerlein, Ezio Bonifacio, Michael Hummel, Sandra Hummel, Kristina Foterek, Mathilde Kersting, Annette Knopff, Sibylle Koletzko, Claudia Peplow, Roswith Roth, Joanna Stock, Elisabeth Strauss, Katharina Warncke, Christiane Winkler, Jorma Toppari, Olli G Simell, Annika Adamsson, Heikki Hyöty, Jorma Ilonen, Miia Kähönen, Mikael Knip, Annika Koivu, Mirva Koreasalo, Kalle Kurppa, Maria Lönnrot, Elina Mäntymäki, Katja Multasuo, Juha Mykkänen, Tiina Niininen, Mia Nyblom, Petra Rajala, Jenna Rautanen, Anne Riikonen, Minna Romo, Satu Simell, Tuula Simell, Ville Simell, Maija Sjöberg, Aino Stenius, Eeva Varjonen, Riitta Veijola, Suvi M Virtanen, Mari Åkerlund, Åke Lernmark, Daniel Agardh, Carin Andrén Aronsson, Maria Ask, Jenny Bremer, Ulla-Marie Carlsson, Corrado Cilio, Camilla Ekstrand, Emelie Ericson-Hallström, Lina Fransson, Thomas Gard, Joanna Gerardsson, Rasmus Håkansson, Monica Hansen, Gertie Hansson, Susanne Hyberg, Fredrik Johansen, Berglind Jonasdottir, Linda Jonsson, Helena Elding Larsson, Barbro Lernmark, Maria Månsson-Martinez, Maria Markan, Theodosia Massadakis, Jessica Melin, Zeliha Mestan, Kobra Rahmati, Anita Ramelius, Falastin Salami, Monica Sedig Järvirova, Sara Sibthorpe, Birgitta Sjöberg, Ulrica Swartling, Erika Trulsson, Carina Törn, Anne Wallin, Sofie Åberg, William A Hagopian, Xiang Yan, Michael Killian, Claire Cowen Crouch, Jennifer Skidmore, Stephen Ayres, Kayleen Dunson, Diana Heaney, Rachel Hervey, Corbin Johnson, Rachel Lyons, Arlene Meyer, Denise Mulenga, Emma Schulte, Elizabeth Scott, Joshua Stabbert, John Willis, Dorothy Becker, Margaret Franciscus, MaryEllen Dalmagro-Elias Smith, Ashi Daftary, Mary Beth Klein, Chrystal Yates, Jeffrey P Krischer, Michael Abbondondolo, Sarah Austin-Gonzalez, Rasheedah Brown, Brant Burkhardt, Martha Butterworth, David Cuthbertson, Christopher Eberhard, Steven Fiske, Dena Garcia, Veena Gowda, David Hadley, Hye-Seung Lee, Shu Liu, Xiang Liu, Kristian Lynch, Jamie Malloy, Cristina McCarthy, Wendy McLeod, Chris Shaffer, Laura Smith, Susan Smith, Roy Tamura, Ulla Uusitalo, Kendra Vehik, Ponni Vijayakandipan, Keith Wood, Jimin Yang, Beena Akolkar, Kasia Bourcier, Thomas Briese, Suzanne Bennett Johnson, Steve Oberste, Eric Triplett, Liping Yu, Barbara Davis, Dongmei Miao, Barbara Davis, Polly Bingley, Alistair Williams, Kyla Chandler, Saba Rokni, Joanna Boldison, Jacob Butterly, Gabriella Carreno, Claire Caygill, Ivey Geoghan, Anna Long, Molly Payne, James Pearson, Sophie Ridewood, Rebecca Wyatt, Elisabeth Aardal Eriksson, Ing-Marie Lundgren, Ewa Lönn Karlsson, Dzeneta Nezirevic Dernroth, Iris Erlund, Irma Salminen, Jouko Sundvall, Jaana Leiviskä, Mari Lehtonen, Randie R Little, Alethea L Tennill, Henry Erlich, Steven J Mack, Anna Lisa Fear, Oliver Fiehn, Bill Wikoff, Brian Defelice, Dmitry Grapov, Tobias Kind, Mine Palazoglu, Luis Valdiviez, Benjamin Wancewicz, Gert Wohlgemuth, Joyce Wong, Joseph F Petrosino, Santica M Marcovina, Vinod P Gaur, Richard D Smith, Thomas O Metz, Charles Ansong, Bobbie-Jo Webb-Robertson, Hugh D Mitchell, Heather Higgins, Sandra Ke, Jin-Xiong She, Richard McIndoe, Haitao Liu, John Nechtman, Yansheng Zhao, Na Jiang, Stephen S Rich, Wei-Min Chen, Emily Farber, Rebecca Roche Pickin, Jordan Davis, Dan Gallo, Jessica Bonnie, Paul Campolieto

Affiliations

¹ Department of Clinical Sciences, Lund University, CRC, Jan Waldenströms Gata 35, Skåne University Hospital (SUS), 20502 Malmö, Sweden.
² Health Informatics Institute, University of South Florida, 3650 Spectrum Boulevard, Suite 100, Tampa, FL 33612, USA.
³ Barbara Davis Center for Childhood Diabetes, School of Medicine, University of Colorado Denver-AMC, 1775 Aurora Court, Aurora, CO 80045, USA ; Colorado School of Public Health, Department of Community and Behavioral Health, University of Colorado Denver-AMC, 13001 E. 17th Place, Aurora, CO 80045, USA.
⁴ Institute of Diabetes Research, Helmholtz Center Munich and Clinic on the right of Isar, Technical University Munich, Research Group Diabetes e.V., Ingolstaedter Landstrasse 1, 85764 Neuherberg, Germany.
⁵ Department of Pediatrics, University of Turku, Kiinamyllynkatu 4-8, 20100 Turku, Finland.
⁶ Department of Medical Humanities and Social Sciences, Florida State University College of Medicine, 1115 West Call Street, Tallahassee, FL 32306, USA.
⁷ Department of Clinical Sciences, Lund University, CRC, Jan Waldenströms Gata 35, Skåne University Hospital (SUS), 20502 Malmö, Sweden ; Health Informatics Institute, University of South Florida, 3650 Spectrum Boulevard, Suite 100, Tampa, FL 33612, USA ; Barbara Davis Center for Childhood Diabetes, School of Medicine, University of Colorado Denver-AMC, 1775 Aurora Court, Aurora, CO 80045, USA ; Institute of Diabetes Research, Helmholtz Center Munich and Clinic on the right of Isar, Technical University Munich, Research Group Diabetes e.V., Ingolstaedter Landstrasse 1, 85764 Neuherberg, Germany ; Department of Pediatrics, University of Turku, Kiinamyllynkatu 4-8, 20100 Turku, Finland ; Pacific Northwest Diabetes Research Institute, 720 Broadway, Seattle, WA 98122, USA ; Center for Biotechnology and Genomic Medicine, Medical College of Georgia, Georgia Regents University, 1120 15th Street, CA-4123, Augusta, GA 30912, USA.

PMID: 26682228
PMCID: PMC4670659
DOI: 10.1155/2016/2720650

Abstract

Background: To characterize participant reasons for withdrawing from a diabetes focused longitudinal clinical observational trial (TEDDY) during the first three study years.

Methods: 8677 children were recruited into the TEDDY study. At participant withdrawal staff recorded any reason parents provided for withdrawal. Reasons were categorized into (1) family characteristics and (2) protocol reasons. Families who informed staff of their withdrawal were classified as active withdrawals (AW); families without a final contact were considered passive withdrawals (PW).

Results: Withdrawal was highest during the first study year (n = 1220). Most families were AW (n = 1549; 73.4%). PW was more common in the United States (n = 1001; 37.8%) and among young mothers (p = 0.001). The most frequent protocol characteristic was blood draw (55%) and the most common family reason was not having enough time (66%). The blood draw was more common among female participants; being too busy was more common among males. Both reasons were associated with study satisfaction.

Conclusions: Results suggest that, for families of children genetically at risk for diabetes, procedures that can be painful/frightening should be used with caution. Study procedures must also be considered for the demands placed on participants. Study satisfaction should be regularly assessed as an indicator of risk for withdrawal.

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Figures

**Figure 2**
Number of withdrawals by age of last visit and by country divided into passive withdrawals (PW) (checked) and active withdrawals (AW) (white).

See this image and copyright information in PMC

References

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Participant Experiences in the Environmental Determinants of Diabetes in the Young Study: Common Reasons for Withdrawing

Collaborators

Affiliations

Participant Experiences in the Environmental Determinants of Diabetes in the Young Study: Common Reasons for Withdrawing

Authors

Collaborators

Affiliations

Abstract

Figures

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Other Literature Sources

Medical